30 and now struggling with my Diabetes more than ever...

[AdamMo95]

Growing up I was able to do whatever I like without a care for my diabetes... Honestly I would travel wherever I wanted to go, eat whatever.. etc.. But ever since covid things have changed. It was when I was first introduced to a CGM and I became overly obsessed with my numbers. Overly obsessed with being in the green section. Overly obsessed with what I eat and making sure it isn't high in carbs (I lost ridiculous amount of weight but still within my BMI)...

Unfortunately this has ended up making me leave work, becoming too overwhelmed, and the worst part, experiencing my first ever LOW reading. This panic made me fear ever going low and ever taking too much insulin. I've had two appointments with my endocrinologist who helped me reduce my insulin but this hasn't stopped me fearing travelling, fearing getting back to work... etc..

What do I do? I've never tried a pump before not sure. Anyone been in a similar situation? How do I go back to being care free and actually wanting to enjoy my life rather than let my diabetics control my life?

Any advice would be really helpful. It's difficult getting through to my Endo since they are extremely busy (NHS) so I am left waiting for my appointments...

 

[Jaylee]

Hi @AdamMo95 ,

Welcome to:the forum.

First for me is I always make sure I carry hypo treatment wherever I go.
Most my clothing has pockets to take Haribos of Jelly babies.
It’s better to have this stuff & not need it, than the other way around.

Libres?
Libres lag with recovery from hypos due to the interstitial fluid it tests the sugar content of under the skin getting its share off glucose later than the brain does?
You should find a blood test with a meter shows back up in range a good 20 minutes before the Libre says you are?
Which going by the Libre alone with lows can give an uneasy false alarm on recovery time..

Using a sensor is an eye opener.

I work & play in 2 bands. If anything for me I use it to lessen the impact of a hypo if it happens.
As opposed the the old days when I had the hypo symptoms, treated.. Then felt worse before recovering?

It’s oddly one of the reasons I joined metal bands. The “reputation for rock & roll excess..” easy to hide a hypo amongst everyone else’s hedonism.

 

[AdamMo95]

Hi @AdamMo95 ,

Welcome to:the forum.

First for me is I always make sure I carry hypo treatment wherever I go.
Most my clothing has pockets to take Haribos of Jelly babies.
It’s better to have this stuff & not need it, than the other way around.

Libres?
Libres lag with recovery from hypos due to the interstitial fluid it tests the sugar content of under the skin getting its share off glucose later than the brain does?
You should find a blood test with a meter shows back up in range a good 20 minutes before the Libre says you are?
Which going by the Libre alone with lows can give an uneasy false alarm on recovery time..

Using a sensor is an eye opener.

I work & play in 2 bands. If anything for me I use it to lessen the impact of a hypo if it happens.
As opposed the the old days when I had the hypo symptoms, treated.. Then felt worse before recovering?

It’s oddly one of the reasons I joined metal bands. The “reputation for rock & roll excess..” easy to hide a hypo amongst everyone else’s hedonism.

Thank you for this, yes I always carry sweets and high in sugar drinks just in case but that doesn't take away the fear of dropping low very fast.. That's my biggest worry. I struggle to eat meals outside just in case I took more insulin than I needed or vice versa

 

[Jaylee]

Thank you for this, yes I always carry sweets and high in sugar drinks just in case but that doesn't take away the fear of dropping low very fast.. That's my biggest worry. I struggle to eat meals outside just in case I took more insulin than I needed or vice versa

I’ll be honest with you. I have no fear of lows..
had to “use the force” since 1976 on porcine insulin. (No meters. No sensors. Back then.)
But when I have a gig. (Weekends.) sugar drinks just incase.. as a singer can’t do a full stomach. Also restricts the diaphragm for breathing? It also takes any bolus insulin on board out of the equation. But I will eat after the gig. Hungry, not eaten in 12 hours.

At the end of the day I see a hypo as a cognitive impairment..
a hazard of the meds that accompany living with T1 for me
I empathise it can affect the “day job” (worked a fair few of them in my time including occasional night shifts?) performance when it happens.. lol, I’ve had to hold myself accountable?
Been lucky there are some great gaffers..

In my experience working in the UK.
Takes a hell of a lot to get the sack..
I’ve been balled out by a a non understanding manager & see my graph shoot up due to s stressful liver dump.
Seriously, a colleague came up to me just after & mentioned my “stocks & shares seemed to be doing well..”

It sounds easy for me to say..
Don’t let this stop you grabbing life by the horns..

You can always mention your diabetes to HR as a last resort & see the room shrink for them..
“Reasonable adjustments in the workplace.” Very last resort for me. Untill I move on…

 

[CheeseSeaker]

It can be scary stuff - but something we live with (generally quite successfully - 52 years in now)

The idea for a healthy long life is to stay in the green zone - thats tricky to do and takes a lot of work - but its more possible now than ever with the new tech we have available.

There is no one right choice for treatment, just what suits you, I found pumps made me safer, CGM safer still, and looping is much more safe - but nothing is 100%.

If you're concerned, start reading up on Hybrid Closed Loops or HCL (current NHS offering) where the pump uses intelligence to talk to your CGM and adjusts insulin for you based on whats happening.

It might help you improve your life - if you run high a lot of the time, it can cause damage to your health - if you run low that same (though usually quicker).

Its all achievable on Injections - I find pumps much easier to live with and am a lot safer than ever, but it is a lot to learn (but all possible and for me at least worth it).

 

[Juicyj]

Hello @AdamMo95

It's easy to get attached to CGM's and obsess over numbers, sounds like it's time to step back mentally as this is wiping you out.

NICE guidelines indicate 70% for TIR, just keep that in mind and try to focus on this instead of being in the green all the time, the odd high is fine. Re-adjust your focus on checking TIR every 2-3 days instead rather than fixating on green, this is a virtually unachievable target and just focusing on this alone will wipe you out, you won't have any energy left for any other area of your life and you need to get back to living and working and just doing the standard stuff you were doing before. Having a LOW reading in itself can cause feelings of anxiety simply from the hormones released to manage the LOW and can leave us feeling shaky and worn out, these will pass, have confidence, just ensure you're well equipped and have treatment close to hand in case it happens again, they are unavoidable, despite brilliant control.

A little help with the anxiety is to think of trying some meditation or a even a yoga class that focuses on relaxation, don't wait on the NHS, my experience has lead me to try alternatives means of managing my mental overload, my DSN is great but she cannot help or fix it for me when i've been feeling over whelmed. Also try and see if there's any local t1d support groups too - talking to others who get it helps loads too.

 

[EllieM]

T1 for 55 years here, so I've seen a wide range of technology. (Got my first glucometer in my twenties.)

Have you had any Los where you needed outside assistance @AdamMo95 ?

Personally, when I was on MDI I did get some ambulance inducing lows, mainly when I was keeping my bgs too low. For me, pre cgm, I found that an hba1c much less than 7% or 50mmol/mol resulted in loss of hypo awareness and some dangerous hypos. So I did find it scary.

With the advent of cgms I regained hypo awareness by aiming to keep my bg above 6 for a while, but I still got too many (in the opinion of my endocrinologist) hypos, and she put me on a pump. I've been on a pump for just over a year and it has made life easier for me, far fewer hypos and less stress, but I second @Juicyj 's suggestion that you try for a TIR of 70% rather than being in the green range 100% of the time. (I was actually first offered a pump 4 years ago and just wish I'd said yes then.)

In my experience cgms are slow to recover from hypos, so I do tend to use a meter if I'm seriously low, just because I can tell much more quickly that my bg is going up and so don't panic. Also, in my personal experience, a LO reading on a cgm isn't always even a hypo reading on a glucometer, so it's well worth checking with a meter.

Good luck

 

[Jaylee]

One thing worth checking out @AdamMo95 .

Is the CGM graphs from non-diabetic "biohacker" fitness or athletic types?
(In experiments on refueling for competitive bike race & such like..)
Even with a fully functioning pancreas & metabolism, it's not always a flat line.

 

[AdamMo95]

I’ll be honest with you. I have no fear of lows..
had to “use the force” since 1976 on porcine insulin. (No meters. No sensors. Back then.)
But when I have a gig. (Weekends.) sugar drinks just incase.. as a singer can’t do a full stomach. Also restricts the diaphragm for breathing? It also takes any bolus insulin on board out of the equation. But I will eat after the gig. Hungry, not eaten in 12 hours.

At the end of the day I see a hypo as a cognitive impairment..
a hazard of the meds that accompany living with T1 for me
I empathise it can affect the “day job” (worked a fair few of them in my time including occasional night shifts?) performance when it happens.. lol, I’ve had to hold myself accountable?
Been lucky there are some great gaffers..

In my experience working in the UK.
Takes a hell of a lot to get the sack..
I’ve been balled out by a a non understanding manager & see my graph shoot up due to s stressful liver dump.
Seriously, a colleague came up to me just after & mentioned my “stocks & shares seemed to be doing well..”

It sounds easy for me to say..
Don’t let this stop you grabbing life by the horns..

You can always mention your diabetes to HR as a last resort & see the room shrink for them..
“Reasonable adjustments in the workplace.” Very last resort for me. Untill I move on…

Hi @Jaylee

Can I just say what an incredible person you are for the way you look at diabetes, it is very inspiring for me especially your take on how to deal with lows. My biggest fear with them is having a seizure in public or alone with nobody around so I hope I never have to experience that but to have the mindset not to fear it is something I have to start practicing which will then hopefully lead to my healing. I definitely want to make sure the insulin I am taking is not enough to cause me serious harm and that the snacks I have are enough to combat a serious low.. That will help me live in peace Thank you for sharing your experiences and kind words!

 

[AdamMo95]

It can be scary stuff - but something we live with (generally quite successfully - 52 years in now)

The idea for a healthy long life is to stay in the green zone - thats tricky to do and takes a lot of work - but its more possible now than ever with the new tech we have available.

There is no one right choice for treatment, just what suits you, I found pumps made me safer, CGM safer still, and looping is much more safe - but nothing is 100%.

If you're concerned, start reading up on Hybrid Closed Loops or HCL (current NHS offering) where the pump uses intelligence to talk to your CGM and adjusts insulin for you based on whats happening.

It might help you improve your life - if you run high a lot of the time, it can cause damage to your health - if you run low that same (though usually quicker).

Its all achievable on Injections - I find pumps much easier to live with and am a lot safer than ever, but it is a lot to learn (but all possible and for me at least worth it).

Thank you so much for sharing your experience with the pump, I am desperate to try a pump to see if it will improve my current worries... I've always been on MDI so maybe something new might be the best thing for me to get back on track? I will contact my GP to fast forward an appointment with my endocrinologist so that way I can discuss my worries and what the best solution would be...

You've inspired me to not give up with the experience you have with Diabetes thank you so much

 

[AdamMo95]

Hello @AdamMo95

It's easy to get attached to CGM's and obsess over numbers, sounds like it's time to step back mentally as this is wiping you out.

NICE guidelines indicate 70% for TIR, just keep that in mind and try to focus on this instead of being in the green all the time, the odd high is fine. Re-adjust your focus on checking TIR every 2-3 days instead rather than fixating on green, this is a virtually unachievable target and just focusing on this alone will wipe you out, you won't have any energy left for any other area of your life and you need to get back to living and working and just doing the standard stuff you were doing before. Having a LOW reading in itself can cause feelings of anxiety simply from the hormones released to manage the LOW and can leave us feeling shaky and worn out, these will pass, have confidence, just ensure you're well equipped and have treatment close to hand in case it happens again, they are unavoidable, despite brilliant control.

A little help with the anxiety is to think of trying some meditation or a even a yoga class that focuses on relaxation, don't wait on the NHS, my experience has lead me to try alternatives means of managing my mental overload, my DSN is great but she cannot help or fix it for me when i've been feeling over whelmed. Also try and see if there's any local t1d support groups too - talking to others who get it helps loads too.

Hi @Juicyj

Thank you for the kind motivation and much needed advice/suggestion. Like you've said I need to stop fixating on the numbers daily as it just stops me from actually doing my daily tasks. The idea of yoga has always been on my mind as well as mindfulness so will give that a go for sure. I just want to be sure that I am taking the correct amount of insulin so if I were to go low, it can be fixed without going 2.6 for example... I'll start working on the advice you gave me

 

[AdamMo95]

T1 for 55 years here, so I've seen a wide range of technology. (Got my first glucometer in my twenties.)

Have you had any Los where you needed outside assistance @AdamMo95 ?

Personally, when I was on MDI I did get some ambulance inducing lows, mainly when I was keeping my bgs too low. For me, pre cgm, I found that an hba1c much less than 7% or 50mmol/mol resulted in loss of hypo awareness and some dangerous hypos. So I did find it scary.

With the advent of cgms I regained hypo awareness by aiming to keep my bg above 6 for a while, but I still got too many (in the opinion of my endocrinologist) hypos, and she put me on a pump. I've been on a pump for just over a year and it has made life easier for me, far fewer hypos and less stress, but I second @Juicyj 's suggestion that you try for a TIR of 70% rather than being in the green range 100% of the time. (I was actually first offered a pump 4 years ago and just wish I'd said yes then.)

In my experience cgms are slow to recover from hypos, so I do tend to use a meter if I'm seriously low, just because I can tell much more quickly that my bg is going up and so don't panic. Also, in my personal experience, a LO reading on a cgm isn't always even a hypo reading on a glucometer, so it's well worth checking with a meter.

Good luck

Hello @EllieM

I really like the idea of focusing on my TIR rather than checking if I am in the green zone every 10 minutes... My new goal is checking if I am in range 70% the last three days. I will give this a go and stop checking the Libre app. I will also take your advice on bringing my numbers slightly higher to regain hypo awareness so thank you so much for this suggestion I will bring it up with my Endo

I had no idea the CGMs were so delayed so I now got a glucometer and it's a nice small compact one which I will take with me everywhere for peace of mind thanks I have a regular one at home but hard to carry so I found a much better one!

Thank you

 

[AdamMo95]

One thing worth checking out @AdamMo95 .

Is the CGM graphs from non-diabetic "biohacker" fitness or athletic types?
(In experiments on refueling for competitive bike race & such like..)
Even with a fully functioning pancreas & metabolism, it's not always a flat line.

I'm using the official Librelink app and sometimes use sweet dreams app

 

[Jaylee]

Hi @Jaylee

Can I just say what an incredible person you are for the way you look at diabetes, it is very inspiring for me especially your take on how to deal with lows. My biggest fear with them is having a seizure in public or alone with nobody around so I hope I never have to experience that but to have the mindset not to fear it is something I have to start practicing which will then hopefully lead to my healing. I definitely want to make sure the insulin I am taking is not enough to cause me serious harm and that the snacks I have are enough to combat a serious low.. That will help me live in peace Thank you for sharing your experiences and kind words!

Thank you for your very kind words.

I’ve come close as a kid.
Had to feed the “beast” on cycling trips with a friend.
Talked absolute Botox to my wife’s boss & his wife on a dinner night & mistiming the expected/estimated dose..
Lol, I even had someone video me treating a hypo with coke & rambling about sheds during a live gig??

I’ve been in bands with other T1 musicians in the past & covered for them too.. (before sensors.)
One guy. I was round his studio recording & spotted his low before he did..

I can flick my wrist during the day job or a gig & see my BG on a watch. Make my decisions as and when..
Never let it stop you doing what you do.

I'm using the official Librelink app and sometimes use sweet dreams app

I have tried out a few apps in my time & settled on Juggluco which works with my budget & the tech I use..
By the way. I use Lantus & Novorapid..
Get on well with novo.. Lantus on the other hand? I need a 0.5 unit measure pen. However..this is from experience needs my change to get it closer?

 

[Juicyj]

Hi @Juicyj

Thank you for the kind motivation and much needed advice/suggestion. Like you've said I need to stop fixating on the numbers daily as it just stops me from actually doing my daily tasks. The idea of yoga has always been on my mind as well as mindfulness so will give that a go for sure. I just want to be sure that I am taking the correct amount of insulin so if I were to go low, it can be fixed without going 2.6 for example... I'll start working on the advice you gave me

Yoga is a brilliant way to relax and calm the mind, pick the right class though, dynamic yoga sends me low but a relaxing slow yoga class keeps me in range.

Taking the correct amount of insulin is also a difficult one to pin down, when you factor hormones, heat, illness, time of day, food etc etc there is no precise magic formula to insulin dosing, we are all literally doing our best to get the numbers right all the time, but again this is another energy drain exercise, what we all need to rely on is our intuition and gut feeling, just try and gauge this from time to time, I run so checking a phone or my pump can be hard whilst running, I have good perception of my BG levels because of this and will often treat a falling low at 6-6.5mmol/l for this reason as I aim to avoid the low, a low stops me from running so using my intuition to clock how I am feeling is so important. Also remembering that a CGM can be out by 20 mins so it's vital to interpret the feeling of a falling BG to treat before it stops you in your tracks.

What is your range currently set at ?

 

[CheeseSeaker]

Thank you so much for sharing your experience with the pump, I am desperate to try a pump to see if it will improve my current worries... I've always been on MDI so maybe something new might be the best thing for me to get back on track? I will contact my GP to fast forward an appointment with my endocrinologist so that way I can discuss my worries and what the best solution would be...

You've inspired me to not give up with the experience you have with Diabetes thank you so much

Glad I can help a bit - T1 is a ******, but don't give up.
I refused change for a long time - then had a series of disabling low BGs (was living alone) that scared the beejeezus out of me and decided to try a pump.

The new HCL is life changing - can't recommend it enough. Lots of work to understand what on earth you body is doing and what the insulin is doing, and what food is up to when you eat it - but quality of life (and safety) is amazingly improved for most of us (though we all have options to stick to different treatments if thats what we want.

I run a DIY (fully closed loop) loop - even more work to set-up, but means I can eat and exercise (more or less) without telling my gadgets anything and it sorts it out for me - nearer being 'human' again, but it took 3 years of work to get it right and I still need to tweak quite regularly.

Point is - we are getting there, we are approaching a better artificial pancreas with the tech and learning in the last 10 years, its better today than ever, tomorrow looks like more progress is on the way.

I'd recommend starting to read up on HCL and what it can do - it really is brilliant (and life saving)